BLOG #1: Focused Excerpt

Excerpts from All Because of Henry by Nuala Gardner, eBook 2013 Edition; with < My Thoughts > by Sara Luker –

(3% indicates focused excerpt location in the Kindle version of the book, instead of page numbers.)

Focuses excerpts to highlight Autism & SCHOOL...

3% I saw my son emerge from the changing rooms, and my soul swelled. What a handsome grown man he had become! Remembering that lost and lonely child, that child who had spent days rocking in a corner of a room, unable to communicate or relate, I thought, Wow! Look at my incredible, handsome son now!

Dale chose the most expensive outfit on the rail – the designer suit. After much deliberation his dad and I decided that no matter what we would support him in his pursuit of his profession. He was returning to a system which had helped him be the person he was today, and that was huge.

6% If only all the people to have involvement in Dale’s future would be as understanding and supportive of his achievements.

Amy’s quality of life and progress at school would have been very different, without her friends. Even in that very first year of school, that was apparent.

10% As every mum knows, the beginning of school is a time of scraped knees, bugs and illnesses. Amy certainly had her fair share of all that. One week she was unsettled and unhappy, repeatedly telling me that she had a sore eye.

She insisted that her eyes were really painful. I drew on her obsession. “Amy, how sore is you eye? Is it a walk, trot, canter or gallop sore?” “Nuala! It’s galloping sore!” now I knew that she was in real pain. With Dale I had been able to use the colors and numbers of the Thomas trains to express his pain and anxiety levels.

She insisted that her eyes were really painful. I drew on her obsession. “Amy, how sore is you eye? Is it a walk, trot, canter or gallop sore?” “Nuala! It’s galloping sore!” now I knew that she was in real pain. With Dale I had been able to use the colors and numbers of the Thomas trains to express his pain and anxiety levels.

11% With Amy settled into school, it was time to focus on Dale. We were determined to help him access college. When he qualified, he would have the same rights to employment as any others of his generation. But to get there, Dale had many more hurdles to overcome than most.

12% As his parents we never subsidized Dale at all. He bought all his own clothes, DVDs and CDs. He paid for Henry’s food and insurance. He learned the value of money as well as how to manage it responsibly and quickly. He became adept at finding the best deals. Often, he’d comment on prices.

Some transitions are so simple – painting a classroom another color, a changed room layout, new furniture, a different teacher. Major transitions like leaving the familiar secondary school to the navigation of a big, college environment had to be addressed and planned months ahead.

Firstly, he had to cope with and integrate into a big college environment. I must stress that he needed the many specialized skills of a variety of integrated services. In those fifteen years since his diagnosis I had come across a very extreme range of professional abilities and aptitudes.

Dale needed to demonstrate that vital in-depth knowledge that he needed. A local transitional social worker helped with that. She ensured that Dale received the support he needed to transfer from school to college.

Her input was life-changing. With benefits in place and with Joyce’s support and Dale had a decent income for college. Her next task was to help him get a travel card for subsidized public transport use. This would allow him greater freedom, without worries about costs.​14% Dale’s friends also attended the college. Scott, David and Matthew met up with him at breaks, and they would go into town together for lunch, just as they had at school. They formed a rock band, practicing in a local community recording studio.

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​16% When Dale’s severe autism was recognized in 1992, I wanted desperately to try to make a difference to the cause and to help other parents in my situation. I had always been heavily involved in support groups, awareness campaigns for the NAS and for Scottish Autism. It was all a great experience but my efforts never seemed to reach the masses or achieve as much as I would have liked.

27% Meanwhile, I started to worry about Dale as he set off for college, his eyes dark and sunken, blinking furiously. He could barely talk for stammering. He had started to tic.Like many with autism, Dale has periodic autistic tics similar to the involuntary muscle movements suffered by a person with Tourette’s Syndrome. On the rare occasion it happened, it was a serious sign he was in autism crisis.< My Thoughts > “…Tourette’s Syndrome.”Retrieved from: www.cedars-sinai.eduTourette syndrome is a neurological disorder that causes people to make unintended sounds, words and body movements, called tics. These tics may last from several seconds to minutes, and have no meaning to that person.. Most people have their own unique type or pattern of tics. Severe episodes can interfere with the person’s daily lives.28% “Mum, I’m really sorry to let you all down, but I can’t take it anymore. I want to leave college. Mum, I’m beat! Please help me get out of there.”“Dale, go to Glynhill – just to get your progress reports. I guarantee, you will not be going back to college or Glynhill until we meet with your trainer to sort this mess out!”What on earth was going on? A trainer who didn’t understand her job? A trainer who didn’t understand autism?What we found out was that they thought Dale was not working at a satisfactory level. “Dale needs an awful lot of support and direction. He needs extra time if he’s to achieve his goals.”< My Thoughts > “Dale needs an awful lot of support and direction.” Bowler, et al. (2015) tells us that the difference between ‘supported’ and ‘unsupported’ tasks is revealed in this study. Participants found that seeing things in a specific order as with an organizational chart or by being given auditory cues helped them become more effective. Having support improved recognition of the order of events.They went on to say that those with autism have different degrees of difficulties with memory and need to be cued to recall or recognize steps in a task or function. In the ‘discussion’ of the results, it was suggested that future support should be a result of spending time understanding and unpacking the complexity of the task. That it is necessary to recognize that those with autism need support to a greater extent than the typical person learning a new task or operation. One suggestion was that the designers of supported environments and educational settings compartmentalize and label tasks or operations into blocks labeled Block A, Block B, etc.28% Thud! Dale was entitled to extra time and human support. Support that apparently had never been implemented. Suddenly I became focused, my anger found its direction.30% “Dale, if we can improve things for you at college and on placement (where he was working in the nursery with autistic children) would you still want to leave?”“Mum, I like working with the children. I won’t give up, but I feel I can’t go back to college ever again.”“Oh, son, I was in awe of you then. I still am.” Finally, he relaxed knowing we were going to fight for his right to be treated fairly and have the same chances as any other student! For the first time in weeks, he slept.We had fought similar battles for Dale in the past and won, but this one was to be our ultimate crusade. Facing another war, we would need new armor, fresh defenses.Dale had endured the torment of bullying at school, like over 40% of autistic children. Now this!31% It wasn’t Dale’s failure, but the college’s failure: “To make reasonable adjustments for Dale. He should not be treated less favorably because he has a disability.”For what seemed the hundredth time in a lifetime of composing fighting letters, we were once again taking days to perfect that all-important letter for Dale’s future.Parenting a child or adult with autism is a sufficiently demanding task, but ask any of those parents to try to count the desperate hours spent on computers, researching and learning about their children’s rights, the days and nights sweating over letters, possibilities, impossibilities, hopes – well, ask them! There’s no way any of us can quantify that.I spent ages on the phone to the Equality and Disability Rights Commission for guidance on what to include in our letter. However raw our feelings, it had to be the most professional letter possible.“To make reasonable adjustments, [Dale] should not be treated less favorably because he has a disability.” We quoted this from his college’s Disability Equality Duty Handbook”32% This was not a luxury but a right. Dale’s adjustments required a support person qualified to work with him. He would be allowed two submissions of assessed work, as well as other support. He was also allowed a new placement.Feeling much better, Dale ventured into his new placement, autistic tics gone. He was sleeping and eating well and looked so much better. The relief for all of us was immense. Our hopes resurfaced.A few days later, an upbeat Dale casually mentioned a strange quirk of fate. His trainer, from fifteen years ago was newly qualified to work at the nursery. She could see how far he had come. Her ability to evaluate Dale’s practical tasks, both constructively and with respect for his autism, allowed him to learn and to grow in confidence.Dale was nominated for the college’s Adult Learner of the Year Award and again we had hope for his future. He wasn’t going to be defeated – autism or no autism!Dale thrived under the new plan, plus some unanticipated “additional support”. Within five minutes of Dale getting up in the morning and beginning his study routine on the computer… the bedroom door would fly open. Enter the boys!Henry would curl up to sleep, wedged under the computer desk, warming his master’s feet. Thomas claimed two-thirds of the bed, sprawled out, snoring drunkenly, tail thudding as he dreamed. However long Dale worked, neither moved an inch until he had finished. Their deep restful breathing had a calming influence which helped Dale work longer.

Dale’s educational motivators has been trains and dogs. I was bursting with inspiration, and so began to develop transitional resources for an educational program, fully aware that the autism and the assistance dogs’ world would have to merge.Assistance and support dogs for clients with ASD were nothing new. What was new was what the working dog world had shown me. Suitable training programs could make the dogs far more beneficial and functional.

24% That October, I became aware of a real need for some kind of dog-autism program. As I wondered how to devise something suitable, I received an email from a friend who had stumbled across the Autism Assistance Dogs (AAD), run by Irish Guide Dogs for the Blind (IGDB) in Cork.

< My Thoughts > “I became aware of a real need for some kind of dog-autism program.”Retrieved from Nuala’s website –http://nualagardnerautism.com/“The program is based on my own research and experiences from both my books. Reading both books isn’t compulsory, but strongly recommend for those interested in using a dog to help a child or adult with autism or disabilities. My program addresses individual needs, with appropriate short and long term educational objectives. Resources I’ve developed are basic and help siblings to be involved.”“I’ve ensured there’s opportunity for progression without unnecessary and intrusive change. Naturally, I use the child’s obsession which increases the child’s bonding with the dog. As I created the program, I have adhered to… JimTaylorknowsautism.com… advice … to keep things real!”

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My purposes are 'educational' in nature. My hope is that this is a place for 'First Responders' and the 'Battle Worn' alike to find information, take solace, and to help one another, in the name of Autism. My commitment is to deliver hope, insight, and a realm of possibilities to all who enter this site.

​Disclaimer: Just to let you know that I, Sara Luker, have put forth my best efforts to create the extended book reviews presented here on this website. I have permission from the authors to publish these Extended Book Reviews. This is just a sharing of stories of those who have gone on before you.

My input as noted by <My Thoughts> are just that... my reflections as a parent, educator, and author. The ideas or considerations presented are given only as hopefully helpful to the viewers relating to the topic or subject.

Any REFERENCES to websites, professional journals, and/or printed material, including eBooks, are solely for educational purposes. I have no involvement in sponsorship or financial interests in these sources.

​Please, understand also that all health matters ALWAYS require professional medical decisions, diagnosis, and treatment by highly qualified and licensed individuals.​Regards,Sara Luker